Dreams or delirium? Why making the right call is important

As they approach death, hospice patients often are transported across time and space to be reunited with loved ones and relive meaningful moments. They do so in dreams and visions, which frequently are a source of great comfort, according to a recently published study. But nursing home and hospice caregivers might not be so comfortable with these dreams — which could lead to patients experiencing less peaceful deaths.

If you provide end-of-life care, chances are good that you’re familiar with “end of life dreams and vision,” or ELDVs, as the study authors termed the phenomenon. Clinicians involved in previous research have described ELDVs as “intrinsic to the dying process,” the investigators noted. Despite this, caregivers have said they fear “judgment, ridicule and embarrassment” if they talk about these dreams and visions, which probably has led to underreporting and a general lack of understanding.

For this study, the researchers didn’t have to rely on hesitant clinicians for information, because they interviewed hospice patients themselves. The authors — from the Center for Hospice & Palliative Care in upstate New York and Canisius College in Buffalo — talked with about 60 patients between January 2011 and July 2012. All met a baseline for cognitive ability and clarity, and nearly 90% reported having at least one dream or vision.

Unlike most clinical studies, this one tugs at the heart strings; I refer you to “Table 3. Content Category Examples.” I know, the title doesn’t sound promising. But the table compiles patients’ vivid descriptions of their dreams and visions. Here’s a sampling:

Roger (age 73) dreamt about his best friend from childhood and saw him running out of the house with hisglove and bat while laughing. They had shared a love of baseball throughout life.

Rita (age 54) dreamt of a childhood friend who caused her great pain. The friend, now deceased, appeared as an old man and said, ‘‘Sorry, you’re a good person,” and, ‘‘If you need help, just call my name.”

Tim (age 51) had dreams that included his deceased parents, grandparents and old friends who were ‘‘telling me I will be okay.” ‘‘I haven’t seen some of these people for years,” he stated, and, ‘‘I know we are going somewhere but don’t know where.”

Tim’s dream was fairly representative, the investigators determined. About 70% of patients described dreams or visions of being reunited with deceased loved ones, and about 60% had dreams about going somewhere.

ELDVs involving deceased friends or relatives had the highest average “comfort rating” on a scale devised for the study. ELDVs in general were a good thing, with more than 60% rated as comforting and less than one-fifth rated as distressing. About 20% were neither comforting nor distressing.

If these dreams provide such comfort to the dying, why might caregivers be alarmed by them? One reason could be their unusual characteristics. They typically feel extremely real to the patient, and “frequently” a dream is “carried into wakefulness” so that the dying person experiences it “as waking reality,” the authors discovered. A clinician might therefore consider an ELDV to be a hallucination or a sign of delirium.

However, ELDVs are experienced by patients “who have clear consciousness, heightened acuity and awareness of their surroundings,” the study showed. They also differ from hallucinations or delirium in “the responses they evoke,” such as “inner peace, acceptance and the sense of impending death.”

Caregivers who unnecessarily medicate in response to ELDVs might actually be robbing people of the dreams’ positive effects and increasing feelings of isolation and fear, the study authors proposed.

The takeaway from this study is straightforward: Palliative care workers should be aware of what ELDVs are and should keep their benefits in mind when making medication decisions. Yet the study obviously raises some questions and ideas that are anything but straightforward — for example, about how scientific-minded people like medical professionals respond to phenomena that are somewhat inexplicable.

I think the hesitancy of medical professionals to discuss ELDVs is understandable — “dreams and visions” sounds more like the poetry about death than the scientific literature about it. But this study reinforced for me that hospice and palliative care workers are stationed at a very mysterious frontier, between life and death; pros like registered nurse Pattie Burnham, who recently was interviewed by This American Life, have seen strange things repeatedly happen on that frontier.

When she started working at a hospice five years ago, Burnham dismissed the notion of comatose patients “waiting” for a loved one to arrive before dying, saying she considered these and similar stories “mumbo jumbo.”

“Now I’m repeating the same stuff that I heard people say when I first got there, because I’ve seen it,” she said.

It seems to me that the caregivers who are hesitant to talk about patients’ dreams and visions might rightly expect to be dismissed for spouting “mumbo jumbo.” But as this study showed, so-called mumbo jumbo might in fact be the most fruitful starting point for serious research, and the result of that research might be improved care and an easier journey for some people across the frontier of life and death.